Tips on Preparing for Death From Someone With Stage 4 Cirrhosis of the Liver
Key takeaways:
Filmmaker Robyn Flanery was diagnosed with end-stage liver disease 9 years ago.
Robyn thought she would only have 2 years to live, but she kept pushing forward.
In addition to working on issues that matter to her, she’s also preparing for death. Here’s how.
Robyn Flanery is dying from cirrhosis of the liver, and she’s angry about it.
It didn’t have to end this way, says Robyn, a 60-year-old former director and producer who specialized in documentaries before her illness made it impossible for her to work. She was diagnosed with the disease after being hospitalized with acute pancreatitis at age 51. A liver transplant would have eliminated the problem, but her multiple efforts to obtain one over the last 9 years have been futile, she says.
Robyn is now in palliative care and in near-constant pain that she rates as an 8 on a 10-point scale. Here, she shares her thoughts on how others can prepare for the end, what helps her mentally navigate her final days, death itself, and what comes next.
9 things to know before you go
Below are nine things that Robyn has learned about death through her journey with end-stage liver disease.
1. It’s OK to be angry or afraid — or both
When you’re preparing for death, Robyn says, your emotions can change rapidly and that’s OK.
2. Get your papers in order
Honestly, Robyn asks, does she even have to say it? “It’s obvious: Have a living will,” Robyn says.
End-of-life planning: To help lessen the burden on your loved ones, review this end-of-life checklist, which covers everything from having a living will to writing your own obituary.
Why do some people get a surge of energy before they die? Learn theories behind why some people’s brains seem to work harder just before death.
What is a living will? A living will is a healthcare directive that lets you express your wishes concerning your medical care.
3. Prepare to feel judged
Robyn knows what that’s like to be judged for having a medical condition. Many people associate liver disease with alcohol dependence or substance use disorder, she says. When people learn of her diagnosis, they seem to view her differently, as if her pain and early death are things she deserves.
“You are absolutely a piece of trash at that point. They assume you’re a drug addict or an alcoholic,” she says.
Robyn’s cirrhosis is not related to alcohol or substance use. Instead, it was caused by a rare genetic disease that led to nonalcoholic steatohepatitis, or NASH. But that shouldn’t matter, she points out. If her disease had been caused by addiction, she says, would that mean she deserves her fate?
“It doesn’t matter how you get this disease. It’s the same disease,” she says. “Don’t be so heavy-handed with your judgment. It’s a slap in the face to judge [others] in the face of human suffering.”
4. Help people understand how much you want them to reach out
Robyn says that the efforts of her friends and loved ones who show up and reach out are so needed and appreciated. But, while compassion is important, it’s good to remember that even the terminally ill have other interests.
“It matters that people reach out — and also that they don’t reach out too much,” she says.
To make moments together even better, Robyn has advice for loved ones:
Watch your words. Robyn recommends avoiding unsolicited statements or views when talking to someone who is sick. “Terminally ill people feel very patronized when someone says, ‘Well, we’re all going to die someday,’” she says.
Keep sad faces to a minimum. Robyn points out that, like her, people don’t like to be pitied.
Think of a terminally ill person as more than a sick person. Be cognizant that being terminally ill does not erase all of the things that make a person unique, Robyn says. Instead of focusing on the ailing person’s new and unwelcome state, loved ones should be prepared to talk about all of the things they’d enjoyed sharing before it felt like a New Year’s Eve countdown clock was on — be that sports, family, celebrity gossip, work, or something else.
When people from the film industry get in touch, Robyn likes to hear what’s happening in the biz since she’s no longer able to work as a filmmaker. “It matters that you can be yourself and not a sick person,” she says. “Sometimes, it’s, like, ‘Can I just be Robyn today?’”
5. Humor is always appreciated
Robyn appreciates a laugh, even if it’s the dark kind of humor.
6. A good therapist is everything. And books help, too.
Robyn has worked with the same therapist for years and says that support has been invaluable.
She’s also found insights in books, including Annie Kagan’s “The Afterlife of Billy Fingers.” And she takes advantage of resources from organizations like End Well, a nonprofit that seeks to transform how people think about dying, grief, and illness. As the organization explains on their website, its goal is “creating a future where ending well becomes a measure of living well.”
7. Work on the things that matter
Having a purpose gives existence meaning, but even tackling a short-term project can be satisfying, Robyn says.
After her diagnosis, Robyn urged her two adult daughters to get tested to see if they had the same genetic condition. While one of her daughters chose not to get tested, the one who did found out that she has the same disease as her mother. Robyn’s reaction was to look for a way to help.
She began studying microbiology, learning the ins and outs of stem cells and CRISPR, a technology that researchers use to modify DNA.
“I went into overdrive. [Jo] Zayner is my friend now,” Robyn says, referring to the former NASA scientist who’s now best known for their efforts to “biohack” their own life via self-experimentation. “I kept working no matter what pain I was in. I didn’t want to give up on my life until I was sure my daughters could handle theirs.”
Her daughter now has a treatment plan in place.
8. Write and write and write
Robyn says she uses her Facebook page like a journal. In addition to sharing stories about herself, she posts recipes and other tidbits of knowledge she wants her family to have.
She’s asked her family not to sit at her bedside and wait for her to die, like she did for her mother. “I’m not going to put my kids through that trauma,” she says.
9. No one living knows what comes next
Robyn had a near-death experience in 2016. She was in the hospital emergency department, bleeding heavily and feeling “ice cold.”
“Then, all of a sudden, I was warm. I was behind my husband’s head, above him and surrounded by pearlescent bubbles. I felt I was being hugged and loved, and it was so good. I was loved and cared for and felt joy,” she says. “Then, all of a sudden, I’m freezing again and back in my body.”
Was that an indication of an afterlife? Robyn says she doesn’t know, but it reminded her that no one else knows either and that prejudging the beliefs of others is a mistake.
“There’s fear first, and you have to step through that fear. It’s about realizing that being alive is just one part of the journey,” she says. “We all as humans wonder what happens after death, and the best thing we can do is live our best.”
Frequently asked questions
Nonalcoholic steatohepatitis (NASH) is a type of liver damage that’s caused by inflammation. Over time, NASH can increase the risk of developing liver failure (cirrhosis) and liver cancer. NASH causes few, if any, symptoms. But people are at higher risk of developing it if they have certain medical conditions or genetic predispositions.
The simple answer is: The same way you’d talk to someone who isn’t terminally ill or dying. That’s how Robyn Flanery wants to be talked to as she approaches the end of her life. She recommends listening before you speak and letting the other person choose the topic. She also warns against giving unsolicited advice and using cliches.
No one living knows the answer to that question, as Robyn Flanery likes to remind people.
The bottom line
Robyn Flanery is preparing to die. But that hasn’t kept her from living. Her approach to death is to get her paperwork in order and to keep working on things that matter to her while she still can.
Why trust our experts?
